The BBC's Navdip Dhariwal"The trust claims they have now been cleared of discrimination" real 56kPenny Green, Downs Heart Group"There are too many similar experiences" real 56k

Monday, 2 April, 2001, 10:04 GMT 11:04 UK

Down's children 'missed out on ops'

Many Down's syndrome babies need heart operations

Down's syndrome children were "less favoured" for potentially life-saving operations at a leading hospital, a report has found.

Doctors at the Royal Brompton Hospital failed to act in their best interests, and to give their parents all the relevant options when discussing treatment, the independent panel said.

Dozens of parents whose babies with Down's syndrome were referred to the hospital in London say they suffered discrimination there.

Some, told that nothing could be done for their babies, took them for second opinions elsewhere and found that the operations they had been denied at the Brompton were possible in other hospitals.

In some cases there was a failure to provide a balanced
view of all the options available...This meant that such children were less favoured in access and treatment by reason of their Down's syndrome

Independent report on Royal Brompton Hospital

The inquiry report says there was a "serious breakdown in trust and communication" at the hospital between some of the doctors and their patients.

"In some cases there was a failure to provide a balanced view of all the options available to the families who we saw.

"This meant that such children were less favoured in access and treatment by reason of their Down's syndrome."

However, it said that doctors did act in "good faith", believing that what they were doing was in the best interests of the patient, and did not intentionally discriminate against the Down's patients.

However, it reports, "that was, in our opinion, the effect of their approach."

The inquiry has recommended that consultations between senior doctors and parents should be taped in future so that parents could listen to a copy at home.

We are pleased that the parents who have been through such a lot have been totally vindicated

Spokesman, Down's Syndrome Association

And the report clears surgeons at the hospital of more general allegations that their death rates were too high.

The "whistleblower" who made the claims about death rates is criticised in the report.

The inquiry panel, chaired by Ruth Evans, head of the National Consumer Council, has taken 18 months to produce the 400 page document, and taken evidence from dozens of parents.

Delight over report

Penny Green, from the Down's Heart Group, which advises parents of Down's children with heart problems, said: "It has caused an incredible amount of distress among families.

"Living with the death of a child is very difficult, but I can't imagine how these families feel, seeing their child deteriorate, knowing that if they had gone somewhere else, their child may have had a chance.

"You have to accept that there was a problem in the past, and put things into place so it can't happen in the future."

A spokesman for the Down's Syndrome Association said she was "delighted" with the report.

She said: "We would welcome all the recommendations made in the report. We are pleased that the parents who have been through such a lot have been totally vindicated."

The association said it was looking forward to working with the hospital to ensure all children with heart defects received the correct care in future.

One of the parents who contacted the inquiry was Maxine Hanson, whose son Ben was operated on at Great Ormond Street Hospital after doctors at the Brompton had recommended he wait five years for a similar operation there.

She said: "Hopefully the recommendations they have put forward will be a good thing. We have got our goal, which is to put the spotlight on this sort of discrimination."

Children with Down's can do well after heart surgery

While, in the 1970s and early 1980s, when success rates in paediatric cardiac surgery were generally much lower, there was a genuine debate about the merits of surgery on Down's syndrome children, subsequent improvements in techniques have made the issue more clear-cut.

The report makes it clear that when Down's syndrome patients did receive treatment at the Brompton, it was of equal quality to that received by any other patient.

'Sham' accusation

But it has disappointed those who believe that, as a whole, the hospital's death rates in paediatric cardiac care were poor.

A review carried out by expert Professor Stewart Hunter has found no evidence to support this.

Professor Newman-Taylor: "good faith"

Results at the unit were as good, if not better, than at many other UK heart hospitals, he says.

However, Josephine Ocloo, who is convinced that poor care contributed to the death of her 17-year-old daughter Krista, denounced this finding as a "sham", and called on Brompton chief executive Mark Taylor to resign.

Approximately 40% of all children born with Down's syndrome, a genetic defect, have a heart problem, such as a "hole in the heart", and they make a large proportion of the children referred to paediatric cardiologists in the UK.

Sir Philip Otton, chairman of the Royal Brompton and Harefield NHS Trust,
said that the inquiry had been a "painful experience".

He added: "We accept and intend to implement in full those of the inquiry team's
recommendations which are within the Trust's area of responsibility."

Professor Anthony Newman-Taylor, medical director of the Brompton, said that the doctors involved had done the best they could for their patients.